Juvenile Dermatomyositis (JDMS)

What About Emotions?

A chronic illness like JDMS affects everyone in the family. At first, your child and other family members may have troubling feelings about the disease and its effect on the family. Yet as your child's health begins to improve, you will gradually feel less troubled about the illness. Settling back into a normal routine will benefit everyone in the family.

What You May Be Feeling

Parents

When you are first told your child has JDMS, you might feel shocked, numbed, or disbelieving. You might also feel guilty, and ask yourself if something you did or didn't do caused your child's JDMS. You are experiencing the grieving process because you have in fact "lost" your healthy child. It takes time to go through this process, weeks to months, and it is a necessary part of accepting your child's chronic illness and coping with it most effectively and productively. 

The child with JDMS

The child with JDMS may feel many different emotions. Children can feel "hurt" by an illness that isn't their fault, blame parents for the illness, adopt a "why me?" attitude, and indulge in self-pity or anger because of restrictions on activities. They may also resent other children who are well, including brothers and sisters. Talk to your health care team about how to best help your child.

Brothers and Sisters

Other children in the family may feel left out because of the amount of time and attention the child with JDMS requires. Or they may feel guilty, as if their normal "bad thoughts" towards their brother or sister had somehow caused the illness. They may be afraid they will also get JDMS or that their ill brother or sister may die from the disease.

What Can You Do To Help Them?

They key to dealing with these emotions is to talk about them with one another.

For Your Child with JDMS

Talk to your child about how she feels about the illness. Allow her to express her anger about JDMS from time to time.

Encourage your child to develop her special talents. Also, expect her to behave as well as other children: for example, make sure that she is given household chores which she can complete.

Encourage your child to learn about JDMS and her treatment program and, as she grows older, give her more responsibility in following that program. Remember that your attitude toward the disease will affect the way your child feels about the disease.

For Other Family Members

Talk to your child's brothers and sisters about JDMS - let them express their feelings about the disease.

Encourage the family to treat the ill child as they did before she became ill - but at the same time, to also remember that she will need some special attention.

For You and Your Spouse

Try not to overprotect your child, even though this is a natural desire. Your child might become too dependent if you do everything for her, or it you do tasks which she is capable of doing.

Don't be "blackmailed" into allowing activities that shouldn't be done, but compromise when you can. Being as consistent as possible will help your child learn what is expected.

Plan special time to spend alone with your spouse, or with the entire family. When your child first becomes ill, you may set aside relationships with other family members. It is important, however, to continue to talk to and spend time with all family members.

Overall, it is important for the whole family to fit JDMS into its regular life pattern and to adapt to the illness rather than fight it. This means fitting your child's treatment program into the family's regular daily schedule. It means asking for special help from people when you need it. Adapting also means talking (and crying) about JDMS now and then. Of course JDMS will make life more difficult than it used to be - but accept this as a challenge rather than a burden.

Where Can You Go For More Help?

Sometimes, the stress of having JDMS may cause your child to develop emotional or behavioral problems that you cannot deal with alone. Other family members may also feel overwhelmed. Whatever the case may be, counseling or support groups can help work things out. Sometimes all that is needed is a talk with a sympathetic person, another family who has a child with a rheumatic disease, or a professional who is trained to help in these situations. The doctor, nurse, or medical social worker may be able to help you or refer you to other sources of help.

What About School?

Generally, children with JDMS should attend a regular school and should not be isolated from other children their same age. But because of JDMS your child may need special services, such as special transportation or supplies, to help her get along in a regular school.

How can you help your child avoid problems at school?

• Be informed
• Inform others

Be Informed

Federal Laws

There are two federal laws which affect your child's rights in school:

• Section 504 of The Rehabilitation Act of 1973

This law forbids all federal programs from discriminating against disabled persons. It means your child should be able to receive services from all programs and agencies (including schools) that receive money from the federal government.

• Public Law 94-142 (The Education for All Handicapped Children Act)

This law says that every child has a right to a free public education, whether or not the child has a disability. It means you can work with your child's school to make sure she receives the services she needs in order to attend public school.

For more details about these laws see When Your Student Has Arthritis, available from your local Arthritis Foundation chapter.

For More Help

If you have problems protecting your child's rights, you can contact the following organizations:

• Arthritis Foundation
  Attn: Juvenile Arthritis
  1330 West Peachtree Street
  Atlanta, Georgia 30309
  
  The Arthritis Foundation focuses on the problems related to arthritis and rheumatic diseases in children.
  
  
• The Federation for Children With Special Needs
  312 Stuart Street
  Boston, Massachusetts 02116
  
  A national organization that helps children with special needs obtain an equal opportunity for education.
  
  
• Muscular Dystrophy Association (MDA)
  810 Seventh Avenue
  New York, NY 10019
  
  A national organization that provides support services for persons with neuromuscular disorders.
  
  
• National Information Center for children and Youth with Handicaps (NICHCY)
  Box 1492
  Washington, DC 20013

Inform Others

Talk to people at the school about your child's illness. Tell your child's teachers, the school nurse, and the principal about:

• the disease, JDMS
• how JDMS affects your child, and problems that may occur in school
• your child's treatment program, including medications taken during school hours
• how to reach you or your child's doctor, if necessary

What About the Future?

Most children have active JDMS for about two years. Since JDMS affects every child differently, some children may have active disease longer than two years, and some may have more severe symptoms than others. Younger children may have an easier course than adolescents. Some children regain their strength quickly and medications can be eliminated during the first or second year but others may have recurrences or may have the type of disease that does not easily respond to medications and needs to be treated for many years. It is impossible to predict how your child will respond, only time will tell. The most important thing is to have confidence in your child's doctor and to insist that your child receive care from a Board Certified Pediatric Rheumatologist.

JDMS is a treatable disease. Although most children recover completely from the disease, some children will have permanent muscle weakness and stiffness from it. Despite the challenges children with JDMS and their families face, the majority of these children grow up to lead a fulfilling, happy life.

NOTE: Juvenile dermatomyositis (JDMS) affects 3,000 to 5,000 children in the United States. While certain signs and symptoms are common in most children with JDMS, the disease affects different children in different ways. The following information describes the general symptoms of and treatment for JDMS, but it is important for you to discuss your child's particular case with your doctor.